The mission of The Myositis Association is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. Our programs and services provide information, support, advocacy, and research for the myositis community.
The Myositis Association of America (MAA) was created by Betty Curry in March, 1993, as the Inclusion Body Myositis Association (IBMA), a nonprofit corporation. The National Organization of Rare Disorders (NORD) provided the names of 16 patients who became the initial members.
Extensive outreach through the medical community and later through the Internet touched off enormous growth. As of January 1, 2003, the name changed to The Myositis Association (TMA) to include the growing membership on every continent. The list of 16 patients has since grown to over 9,000.
Since then, scientists, practicing physicians and other medical professionals have supported the organization through the Medical Advisory Board. This group provides medical information to staff and patients and guides the TMA research program. The research program, begun in 2002, has now funded nearly $6 million in myositis research.
The first conference was held in 1995 and is now an annual event with a panel of medical experts, peer counseling, sessions on coping skills, support group training, and time to meet other patients and their families.
Staff and Boards
Our dedicated staff keeps our operations, resources, and services alive and well for our members. They answer more than 10,000 emails, phone calls and letters each year, and more than 10,000 newsletters are mailed annually.Meet Our Staff
A Board of Directors manages TMA. Our current board of directors is made up of both myositis patients and medical professionals. Our Medical Advisory Board, made up of myositis experts and doctors, is influential in compiling, presenting and reviewing TMA resources for members.
Growth in revenues has increased dramatically, providing a means for continued service to members and their families. We’re dedicated to financial transparency and invite you to review our financials.
If you have a question about The Myositis Association, what we do, or myositis in general, we want to hear from you. Please reach out through our contact form.Reach Out